Tuesday, December 16, 2014

3mo Echo, Cardiology Appt., Sunday School pics

Today's Cardiology Appt went ok, mitral valve remains stable at the high moderate leaking and stenosis but he'd prefer (and I am certainly ok with!) we con't to wait to intervene as long as possible. I think if I remember correctly he said the mitral valve remains stable from the increase in stenosis and leaking last Febr. (high moderate) and I think he said the atrium is enlarged and he felt that was due to blood returning (abnormally) backward from the mitral valve causing stress/pressure. He showed a diagram how the TPL Shunt fluid can be affected by the heart valve issues/enlargement (or maybe it was vice versa but I don't think so) and explained how he felt they all tied in to each other.
As far as the fluid in the lung space from the TPL Shunt he to feels as my PMD and Nrsgn do that it is multi-factorial. Unlike last appt though he seems to have changed his mind about the heart issues affecting the shunts and the shunts affecting the heart issues (was never rocket science to me given the hydrocephalus/pressure affects autonomic system and that controls things like heart rate, BP and breathing).
One thing I don't necessarily agree with him on though is he feels our cont'd issues with high heart rate are somewhat related to the shunt issues which I do not think is the case. I personally feel like regardless of when we get the shunts in atleast a reasonably good place my Heart rate remains high but then again it isnt as if we ever get complete headache resolution with the shunts. So I guess who knows?
He did make a comment regarding the shunt c' cardiac issues that 'I understand this better than I used to' (see above comments) which I am glad he admitted that and appreciated his saying as much. I've just always felt how couldnt a brain issue affect cardiac and vice versa? I also reaaallllllyyyyy appreciate that he, my PMD and Dr.Bragg work together (despite all 3 being at 3 different health systems) and try to go to each other coord. my care/questions vs when 1 may not know something trying to just wing it!
I am not sure who they see (but perhaps Dr.Bragg as I know his Nurse at one pt had asked if I thought she would see another pt of theirs and many of my Providers think very highly of her (given they know the extreme struggles I had prior to her to find a Nrsgn that would listen to me and believe me), but he commented with 2 other pts of his who also have shunts he's witnessed and is what changed his mind that when the 1 pt atleast had an EVD (external shunt) she had headache resolution and her heart rate was back within normal range. When she has had shunt issues but no EVD her heart rate to is high regardless of meds. Funny enough (perhaps only to me!) he like Dr.Bragg commented that it would be ideal for our heart issues if I could have an permanent EVD (I had commented how Dr.Bragg and I used to talk frequently about how much better I felt with EVDs compared to shunts) - I can't remember exactly what he said but something similar to what Dr.Bragg has said numerous times about how w EVDs the settings can be continously adjusted. I have a feeling they must work together with other pts and that she has (if they do) taught him a thing or two, which if that is the case I say AWESOME!
He still feels the many cardiac meds I take are needed regardless of what is causing teh high heart rate/strain on heart (multifactorial) but is partially it seems what influenced his change of opinion. I thought this was interesting given some months ago Dr.Bragg felt that there was a connection between the mitral valve having worsened and our on-going issues with headaches.
I am glad the cough isn't a big concern to my Cardiologist and while it's not the end of the world to me I DO have to say i'd gladly give it up. By the end of the day my chest and mid-back ache something fierce from coughing. This is saying something given the cough IS even improved from pre-this last VP Shunt surgery!
I don't particularly think my Cardiologist likes the fluid being there but I also don't think he was overly concerned although I also don't think it's occured to him prior to 2mo ago if there where periods where there was pleural effusions (fluid in lung space) I didnt have symptoms with it nor did I ever have this cough except after the 2nd OHS (which wasnt related to shunt). He was talking about Dr.Bragg (I can't remember exactly what but somehting to do with the heart stuff and the shunt stuff) and commented how he'd read he latest clinic note and I commented she seemed happy the fluid was reduced and that we both thought it was just another sign of the shunts complimenting each other. I've not read her note yet but he made the comment he wouldnt call what she wrote "happy" with the improvement but more "relieved" (I think that was his choice of words).
Either way we know it's an imperfect situation but better than it was and I HOPE the fluid will eventually (sooner than later preferably) resolve on it's own or perhaps just not build up as much so these secondary symptoms could improve? I realize given the TPL Shunt does drain to the lung space there will likely always be some fluid but that doesn't mean the related symptom are normal!

I've been thinking about some things since Weds' Neurosurgery and PMD Appt., perhaps more out of curiousity for the future but would raising the TPL Shunt a bit higher (I think the setting is around 50, lowest it can go is 30) and lowering the VPS setting a notch (though Dr.Bragg wasnt sure offhand what the setting was ie is it still set at it's lowest, pre-surgery '30' or is it at '40' the 2nd lowest setting.. Non-the-less the reason i've been thinking and wondering about this is the cough is very perstent as the day goes on and so while it's for sure improved since since the VP Shunt revision it is also still a problem. I don't know if we have room to adjust the VP Shunt down so we could maybe adjust the TPL Shunt up but this cough is fierce by the end of the day (pre-surgery it felt like an atomic bomb going off everytime i'd cough by the end of the day, now it just feels like a grenade (the force and thus discomfort I guess) by the end of the day as my mid-back and chest are ridiculously uncomfortable. The cough is just semi-consistent all throughout the day occuring more and more frequently as the day wears on. Pre-VPS surgery it seemed to just occur consistently at a much fiercer degree (again thats saying somthing given it now!)
My other thing i've been wondering about is will the fluid (CSF) eventually go away on it's own and thus the cough clear up? That may be a question more for my Pulmonologist (Lung dr.) when I see her the end of the month. Not urgent, more just curious questions for down the road and the fluid/cough question b/c well by the end of the day my chest is pretty darn uncomfortable.

My Pain Mngmt dr. semi-agreed (didnt disagree just felt my Primary dr could prescribe it) that a oral steroid burst may help the seeming sciatic nerve symptoms - Dr.Simpson in turn did just that and called in SoluMedrol dose pack which i'll start this wk.
Dr.Bratanow did talk about potential steroid injections and still does not feel this is a good way to go as her concern is scar tissue and the TPL Shunt (both potental for introducing infection and she is concerned the sciatic nerve symptoms are in some way related to the TPL Shunt irritating a nerve or related to both shunts though she isnt sure how this would be. She'd like to order a ultrasound to look at soft tissue in lumbar spine as she is also concerned there could be something similar causing this like occured with the nerves that where adhesed together prior to my 1st surgery with Dr.Bragg. I don't know, I just know for whatever reason these sciatic seeming symptoms where not as aweful when the VP Shunt wasnt working well and although the cough/lung fluid improved w the VPS revision the Sciatic nerve symptoms amped up big time. Literally I can be standing in place for as little as 1-2 mins and the symptoms begin and only get worse there out.
Last but not least - I am off to Florida to Disney (MPS) Conf. tomorrow, a little worried how tired i'll be but I should also have plenty of down time and I have all afternoon (I get in around 2 Weds) and night to do my own thing and most of Thurs as well. Instead of going to a Park Sat. afternoon i am most likely giving my Park ticket to a friend but not completely certain on that yet. I just think it would be to hard and uncomfortable to stand in long lines on back issues (which sucks a little actually!). Non-the-less should be a good Conf. =)

On a totally different note albeit i've had about a MILLION people ask me about the cough and if I was ok i've also had family and friends who know me well and who commented they thought this was the best i've looked in a long time s far as the headaches goes! =)
Attached is a couple pics from this past Sundays Sunday School Christmas party (I did a lesson the 1st 40mins of class).
Thanks for stopping by, will update on change in ERT (Infusion) clinic (=/) next update,
Erica
'SS Kids and their gift bags; an ornament and photo album (pics from this past semesters class activities)

'The meaning of the Candy Cane' craft - (very neat)


Our Christmas baking (part of it, I just decorate, lol)

Wednesday, December 10, 2014

Peds Neurosurgery (surgery) F/up, PMD (Hand) Pre-op Appts.

So what a day filled with ALOT of information, not earth shattering information but non-the-less alot of information to think about and store away or remember! In my PMD's case she writes down her thoughts/plan/suggestions at the end of Appts on the after visit summary and with my Peds Neurosurgeon I write myself notes as I walk out to my car.
I guess i'll just start at the beginning with the various things each Provider and I talked about!?
Dr.Bragg, who I might add is so sweet, while I of course am human and doubt her (as with anyone) at times she continually proves she cares and is always trying to think of better options.
I know or think in the back of her mind she still weights the potential for the cranial vault expansion but I think she must 1. sense my hesistation and 2. want to try to avoid it if we can or for as long as we can by considering other options?
She talked to her Codman Rep and although I am not sure if it is actually a Codman valve Dr.Bragg mentioned there is a new valve she may consider next time we have a valve occlusion issue (not if but when, I thought that was kind of funny) that she said is closer to the Strata programmable valves we first started with "and I know we didnt have very good luck with" but this valve has something different about it and she feels might be a good option to try. One downfall she mentioned was it has less setting options than my current Codman Hakin valve(s) which she seemed to have a bit of concern about but then at the same time we do really seem to only use the bottom 3-4 settings on my VP Shunt so who knows? I am open to trying it if/when we need to down the road if she feels it's worth a shot. Worst that happens I guess is we go back to what I have now. She commented in that conversation she cont's to ask her Codman Rep to keep an eye out for something similar to what we have now but better. =) I think it's sweet she seems to think about our issue a fair amount.
I thought that conversation was pretty funny given at the appt this afternoon my Primary dr was asking about and talking about the VPS surgery and the Pleural space fluid amongst other related things and she un-related to Dr.Bragg's comment said to me (along the lines): "I remember the 1st time I saw you for a shunt surgery pre-op, saying to you something like "well this should get you to feeling better again for a longtime and you kind of smiled, nodded and didnt say alot." She then commented along the lines "I now know your normal is to need on-going shunt revisions and for you it isn't unusual". LOL!? =)
Glad atleast she doesnt question my symptoms or sometimes lack of appearance of symptoms (given the time of day I most often see her) and that she goes with the flow and has been amazing at marshalling my other Providers regarding what information is needed for shunt surgeries (ie Coumadin and med adjustments per Cardiology, Stress dose Cortisol per Endocrine, etc). I like her and she's very good at what she does!
She's good at stepping in when she feels something needs to be done but not afraid to give the reigns to another of my Specialists if she feels they can or should handle the situation (whatever it may be). Most of all she's personable and she herself likes (especally) my Cardiologist and Neurosurgeon (her words today) which is good since she works with them some on my care.
With Dr.Bragg's Appt this morning we where talking about the Pleural Space fluid (hot topic these days) and she similar to what she had messaged me the other night commented along the lines "it's interesting how we seem to have another way to know when your VPS may not be working right and that the TPL Shunt causes such irritation" (meaning when it's the sole functioning shunt). I didn't think to ask and wish I would have but why the TPL Shunt would suddenly start causing such irritation to the pleural space and thus the cough and other on-going symptoms? Likewise I didnt think to ask if she thought the residual cough might eventually go away completely?
I think from what my Primary dr has said from the 2 of them (Dr.Bragg, Dr.Simpson) having talked there seems to be consensus that it is partially due to the cardiac issues but I wish I would have thought to ask for their thoughts on this more!
Regarding the INR issues with this past surgery we've formulated a new plan; instead of waiting to test the morning of surgery or just testing the level the day before but then cancelling any surgery if it where to high she suggested I test at her clinic-lab (or if already in Milw test there but make sure she gets the result) and if INR where to high she could relatively easily prescribe a dose of Vit. K to bring the level to range for a surgery the next day.
We'll try this in Jan. with the scheduled (out-pt) Hand surgery. I'm not sure if Dr.Bragg will follow a similar suite in any of her future potential surgeries when/if I am admitted the morning of surgery but I would imagine she may.
On my part it seems I also screwed up the Coumadin dosing for this last surgery, I had thought I was supposed to stop it 3 days prior to surgery (so that Monday for Thurs's surgery) but in fact I should have taken the last dose that Sunday and then skipped doses M-W for Thurs's surgery. I'm not sure the level would still have been in-range but it may have been. Atleast on my part good to know what I in fact should be doing for the future!
Because Sciatic nerve symptoms in my L leg left have been pretty bad again (standing for as little as a minute or 2 in one place is aweful and I am frequently waking up at night) she suggested I ask my Pain Mngmt dr about a possible oral high dose Steroid burst to see if this might help bring inflammation down. Several months ago we had been considering doing some kind of invasive injections in the area Dr.Bragg suspects (but isnt completely certain) may be the cause. Dr.Simpson thinks if we try a high dose steroid similar to what I take before surgeries/procedures or when sick (self injection) but with a different med it could potentially help the symptoms. This would be ideal to prevent anything invasive and thus potential for introduction for infection in areas around the TPL Shunt. My PM dr is a Anesthesiologist by training (amongst several other board certifications) so she'll have knowledge of this. Dr.Simpson was/is willing to prescribe it she just didnt want to "step on any toes". I can appreciate that.
Because there seems always to be many things going on she's watching the fluid around the pleural space (but like Dr.Bragg very happy it has reduced and like Dr.Bragg thinks it's interesting how the 2 shunts seem to play off each other ie when both work symptoms improved some. Pulmonary will con't to monitor that and we all hope nothing invasive is needed as far as pulling off fluid (to test or just to remove fluid)!
We pretty much covered every area from head to toe and talked about stomach spasms i've been getting again which is something in the past (atleast this particular type/symptom) i'd only gotten when I had some type of infection. I am not to worried about it as what's one more issue (right?) as long as I can get it to go away within a few hrs each time (is kind of gut wrenching, feels like your abdomen or stomach is being twisted in sporadic lasting knots that slowly subside each time). She asked that I keep her updated on this ie if it doesnt go away in a few weeks or gets worse; her concern is is there an infection somewhere albeit like w the pleural space cough/fluid I don't show symptoms of anything and CSF was clear from this last surgery (Dr.Bragg released her labs on her systems mychart). I think perhaps Dr.Simpson's bigger concern is with any infection/cold I rarely have fevers (probably due to abnormal autonomic issues) but even so I don't think she's to terribly concerned for now.

Dr.Bragg just said regarding f/up (after we hugged and celebrated my not seeing her over Christmas either right before, during or after for the 1st time in the 3 yrs i've been seeing her!) that she'd be around for the most part should I need anything. Hopefully I won't! It's sweet she cared enough to share what she thought her schedule might be.
Dr.Simpson pretty much said the same, keep her updated on various symptoms and if nothing else we'd talk the day before the Hand surgery.
A week from today I should be in FL at this time! And a week after that is Christmas which is what I am really most excited for; I love seeing my nephews and nieces faces!
Thanks for stopping by,
Don't forget to appreciate those people in your life whoever they may be who help in big and small ways!
God Bless,
Erica